Nevus Outreach, Inc., The association for Large Nevi and related disorders.
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From Where I Sit

No Time Like the Present

Out of practice as I am at writing blogs (I won't bore you with excuses), I just directed my entire High School class to come check out our web site (Pasadena High School, class of 1976, 900+ graduated), so I thought I should write something here to greet them if they drill in as far as "Mark's Blog."

Um, yeah.  almost 20 years ago my daughter was born with a giant mole covering half her body.  The doctors couldn't tell us what it was.  One "helpful" doctor told us she'd die before she was two.  The rest is history and she will be 20 in June and is the Queen of All She Surveys.  I call that a victory, and, as weary as I get sometimes of what I'm doing (I guess it's a character flaw that I seem to require a no-less-than-stellar level of inspiration?), I continue to do what I can ... and in so many ways, I hope that I have really only just gotten started.

Wait, my daughter's an ADULT.  I should have gobs of time on my hands now, right?

So today I woke up to the unhappy reminder of a potential downside of having a giant mole (one of many, really, but don't get me started today).  A lovely young lady in Brazil died from melanoma, presumably a complication of her large congenital melanocytic nevus.  When women die from this (and I have known too many now) it makes me think of my daughter.  The simple, helpless, fear-filled thoughts of a privately scared dad.

Some days I think I have all the answers.  Other days I realize how little I really know at all.  In the dead of winter, these can snowball to make me feel cold and isolated. 

Then, when I look at the Facebook comments in tribute to this young woman who has just died, I remember that the network of all of the families we have collected together under the greater Naevus Global umbrella stands united, surrounding the hurt, and facing the unknown with all the boldness it can muster.

Wow.  Never underestimate the power of moms.  And dads.

Gotta Love Washington - Part 2

I mentioned that I would tell more about how hard all 27 of our National Institutes of Health will be working to not let rare diseases fall through the cracks going forward. In another sweeping legislative move, Congress mandated your National Institutes of Health to create a Strategic Plan for the next 5 years. This makes me chuckle quietly, because I remember when Nevus  Read more...

Gotta Love Washington - Part 1

Started my fall off with a bang – If I would be allowed for a moment to assert that "fall" starts when Labor Day is over. Tuesday I attended the Advisory Council meeting of the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS), as I try to do when possible, and seriously savored a couple instances of happy-feeling about some things getting do Read more...

Definitive Papers on Congenital Nevi

I am pleased to share with you that my friend and colleague Heather Etchevers has put the finishing touches on a project of great value to all of us who are affected by congenital melanocytic nevi (CMN).  Under her leadership, the Scientific Advisory Council of Naevus Global has released a list of the peer-reviewed papers pertaining to CMN which they endorse as t Read more...

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     Mark Beckwith

Executive Director
Nevus Outreach

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